Editorials: Funding gap for childhood cancers heartbreaking

Even when cancer and the effects of the aggressive treatment were ravaging the young body of Jonathan “Jonny” Ormsby Wade II, he managed to smile.

It was not the typical grin of an 8-year-old boy posing for the camera. It was the infectious kind of smile that radiates from deep inside, allowing the soul to shine through.

Even in the darkest times, as the Jerseyville boy battled a rare brain cancer called medulloblastoma and it quickly spread to his spine and other parts of his fragile body, that smile remained.

Jonny died Christmas Eve, his body laid to rest in Oak Grove Cemetery in Jerseyville.

His story is not finished, though.

Even in his passing, he asked for memorials to go to Jerseyville’s parks and recreation department so others could enjoy the beauty of life.

His ordeal touched the lives of thousands through the online chronicles of his mother, Kimberly. She poignantly detailed his year-long battle with an insidious disease, even in his final hours as Jonny’s frail hand rested snug and secure in hers.

Perhaps without intention, her words have also helped bring attention to childhood cancer.

Cancer is largely an adult disease, but still affects more than 10,000 children from birth to age 14 each year, according to government statistics. Three types — acute lymphocytic leukemia, brain and other central nervous system tumors and neuroblastoma — account for more than half of the pediatric cases.

Although survival rates for children, like adults, have improved dramatically during the past several decades, more than 2,500 children will lose the fight this and every year.

The gap in funding for childhood and adult cancer is heart-breaking. The National Cancer Institute devotes an estimated 4 percent of its budget to pediatric cancer.

Imagine how many more lives could be saved with a change in thinking.

It takes advocacy like Kimberly and others have provided.

U.S. Rep. Rodney Davis is helping to amplify that voice. He met Jonny, his mother, Jonny’s twin brother Jacky and their father, Jon, last year and has used the House floor as a forum to call for more research into pediatric cancer.

Last week, he sent his colleagues in the legislature a letter telling them about Jonny’s courage.

“On Jan. 2, thousands of Jonny’s followers watched online as he was laid to rest. Jonny displayed a tremendous amount of courage throughout his battle with cancer; continually stating, ‘I don’t want any other kid to have cancer’,” he wrote.

He included with the letter a simple wristband — a symbol of Project Team Jonny — and asked them to wear it during tonight’s State of the Union address.

We hope to see hundreds of wristbands showing support and tribute to a remarkable young man.